Multiple Sclerosis - For the Records

Straight up I confess that I am a pack rat and could fill several dumpsters with papers that I have saved over the years. For some reason we have every IRS tax statement for all 41 years of our marriage –we hang on to those just in case we might ever be audited.  You never know when they might be needed.

The same goes for our medical records. Ask me what I paid for an MRI in 2008 and I can produce that bill  and the computer discs with the images.  Quiz me on the costs of my husband’s open heart surgery, and I can produce that one, too, along with the sketch by the surgeon of where the bypass grafts were placed 16 years ago.  So yes, I do hang on to papers that I think are important, not because I am a hoarder but because they can be near impossible to replace later on.

Many people are still not aware that they can ask for a copy of their test results and images at the time of their MRI scans – I never leave without having a copy with me.  I have to sign a form stating what I want it for and the answer is always the same – personal records.  I jest with my neurologist, Aaron Boster, that I keep these copies in case I get mad at him and want to leave him for another doctor -   I can just grab my file case of records and go elsewhere.
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A variation of that just happened recently, except I didn’t leave the care of Dr. Boster, I followed him to a new healthcare system.  His new practice is just a few miles away from the previous one, but you would think it was the other side of the world for as long as it took to get my records transferred from one healthcare system to the other. And that’s where my record hoarding paid off.  I was ready to set my first appointment at the new place and they informed me they shouldn’t see me until they had all my records  for continuation of care reasons. My request had been at the previous place for enough time but my records had not yet appeared.  My solution to speed things up was to get out my files, scan the copies and send the records myself.  I was able to make sure the transfer happened quickly because I had all these files.

A group of us were online discussing this problem because several other patients of Dr. Boster were also experiencing a delay in transfer and it took us to the bigger conversation of other reasons to hoard our records.  I’ve often used Hurricane Katrina, the devastating storm that wiped out all the hospitals in New Orleans, as my rationale to save all those scraps that put my medical picture together.  Katrina’s wrath took out all the medical records with the rains and winds – those were in hospitals and doctors’ offices and nursing homes, among other places.  The medical records of millions and millions of tests and procedures were literally gone with the wind. I think it’s wise to keep my own records as a backup copy just in case something would happen to the originals.

Or do you know that there is no standard length of time that records are required to be kept?  That facility that did your latest lab work or MRI imagining might keep them for a year or ten, there is no pattern as to how long they will be available to us to retrieve.

One of the people in this conversation happens to be an MS specialist and he added another good point for saving years of records – they document the progression of our disease and provide valuable timelines should we need to apply for disability.  If we have moved locations or changed doctors, getting those records can be difficult if not impossible.  And after the fact, it always costs significant money to have new copies made of old records.  When I asked about the costs, I was told it would be upward of $2.50 per page to get my copies for my own use.

The next time you go for a health care visit and have the summary handed to you or the test results offered, be sure to take them and place them in a secure spot.  If they aren’t offered, then it is up to you to ask for them. They are your records, you own them and have a right to them, and you never know when you might need them.  I’m glad I had mine.

Wishing you well,


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